My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path. I'm learning how to enjoy whatever path I'm on.

Our yoga teacher, Paul, asked us what we do when we suddenly get angry about having Parkinson’s disease. I had to think about this for awhile. When I have gotten angry about my health challenges, I’ve been known to do some unusual things. I doubt that wood carving and bungee jumping are on everyone’s top ten lists of “ways to cope”.

Those activities are not available to me on a moment’s notice, and it’s probably a good thing. I’m not at all sorry that I did the bungee jump. It was a thrilling ride. It’s not, however, something I would do more than once a year.

Wood carving is more of a calming activity for me, one where I can work slowly and quietly; unless of course, my dystonia kicks in. If my dystonia starts up and my arms start to thrash about, wood carving becomes a thrill for all those around me. My favorite place to carve is in our woodworking room at school. It’s almost always crowded in there, filled with students working on their own projects. Granted, 7th grade boys might enjoy the thrill of dodging carving tools and watching their former kindergarten teacher doing a wild dance around the table, but I don’t think the insurance agent who provides the school liability insurance would find it entertaining.

How, then, do I cope with those moments? My usual response is to DO something…anything that will help me to realize that I still can do something! This is when I generally overdo it. I bake cookies, clean, organize a closet, start a sewing project, volunteer for something at school, chop down a tree, do laundry, write a book, and decide I should go back to college and finish earning my degree. Coping in this way usually earns me a day or two in bed.

Lately, I’ve found another way to deal with those times when I start to feel down. I can take a few good deep breaths (thanks to yoga), stretch a little, relax, and tell myself that this is just a two percent moment. What is a two percent moment? It is a reminder to me that ninety-eight percent of the time I do well. I am happy with my life and I wouldn’t change anything. I have an amazing husband who loves me and supports me, wonderful kids who alternately make me proud and drive me crazy, and I couldn’t ask for better friends. This is my reminder that the discouraging times don’t come about that often. They are only a small fraction of my life – two percent.

Even when those discouraging times happen more than two percent of the time, I will still call them two percent moments. It’s a place to put them and perhaps even a reminder that they are not in charge of my life. I can file them away in the proper file folder and put them in their proper place.

Of course, this is easier said than done. When a two percent moment hits, something funny happens. There are strange feelings that creep up and decide to hijack your brain, shoving it roughly into some corner and then hanging up that “out to lunch” sign. It takes a lot of discipline to be able to reach in to myself and take a look at those feelings and prevent them from taking over. It’s not that I want to ignore the feelings, either. They are part of who I am and when I ignore them, they rebel and start shoving my brain around. Getting to know those feelings and accepting them diminishes their power over me. Allowing myself to experience those feelings, whatever they may be, is incredibly freeing.

Another help is to look at what triggered that particular moment of discouragement. Chances are it was something small. An insensitive remark from someone or an obstacle in my path that causes me to trip can easily be discouraging. After arthritis started in my hands, just the attempt to open a can with a can opener could trigger a two percent moment.

The more I practice my yoga, the more I have the discipline to understand my feelings and cope with them. I am also fortunate to have a good friend whom I call my Buddha friend. As he has short term memory challenges, he has the gift of being totally and completely present in the moment. When he is listening to you, he listens with his whole self. Spending time with this friend is a meditation in itself; so much so, that when I described this friendship to one of my wholistic medical practitioners, she smiled and wasn’t surprised when I said that there is no other time when I have fewer symptoms than when I am visiting with him.

That’s another thing. Two percent moments can work the other way, too. My husband comes up behind me and puts his arms around me or one of my former students stops by the school to visit me or a friend smiles and says something kind. Reading a poem that my daughter wrote will do it, as will playing Scrabble with my son. All of a sudden, I feel wonderful! Life doesn’t get better than this!

The challenge for me is to accept all of these moments without trying to either push them away or hold on to them too tightly. Feel and let go….